Hydrocephalus: Confessions at the edge…

Published on April 15, 2020

I don’t regard myself as suicidal. It’s a very serious thing, to say the least. Therefore, I will NEVER make light of it. Too many people have ended their lives this way and the after-effects do not escape me.

Despite being told that I am, treated with medication and “diagnosed” as depressed (another thing I most certainly am NOT!), I do have to wonder if any of this is worth the fight. There’s a clear difference (for me anyway) between being clinically depressed and going through depressive states. Also, theres a reason why depression comes into the equation, in this case at least. But, even if I were, I’d sure as hell have good enough reason to be! If I have to let those emotions live and breathe in me, to survive the wave, then the rest of the world can just fall in line and keep their opinions to themselves.

Just to be clear, I don’t want anything to be wrong BUT, I also can’t ignore the symptoms I’ve had. An unfamiliar newbie on my journey, reading this post, will not get it (not your fault but hopefully you reserve your opinion, especially if it resembles a: “What are you on about?” scenario).

A few weeks back when all this Coronavirus madness started, and the whole world actually started to take it seriously, I had an MRI of my brain and spine. I was only too happy to wait for my results to become available online and refrained from contacting the surgeon’s room. Long story short, the results last week, are not reflective of what he requested. “Please compare 2007 MRI, previous shunt followed by ETV, 2009. Cyclical headache. Assess patency ETV. Assess evidence chronic low pressure). In fact, there’s no mention of a comparison, or “no chronic low pressure“.

Needless to say, when I read the report, I was livid, disappointed and just fuming. I spent the last few weeks constantly calling to get the X-ray service provider, to upload the images I had on CD for the surgeon as he doesn’t have a CD drive on his laptop. They failed to do this and after a lot of to and fro, I was told they are not “allowed” to upload images taken by another service provider! They wouldn’t even entertain my request to reread the scans to reflect what was actually asked for. Their response, “Well if the surgeon has a problem with the results, then he should call us himself and request a reread”.

I called the surgeons room to inform them and was called back later the day with a follow up Skype appointment for earlier today. I didn’t expect much from the appointment. Given the times where, financially, everyone is strapped for cash, I accepted the appointment with some hesitation. Like I’ve said before, this condition causes a financial burden, which doesn’t necessarily afford you the luxury of declining these kinds of consultations. First and foremost, you don’t get an appointment to see a Neurosurgeon within a matter of days, it’s usually months in advance. Maybe the current situation has affected his list of appointments. Maybe my appointment is just a means for him to get some form of income amidst all this madness. Who knows?

Having gone through so much disappointment over the years with this damned condition, I expected much of it to be the same. I anticipated this consult going nowhere and to probably be told: “Oh, it’s alright, let’s just wait until you’re symptomatic again and meet at the hospital as previously agreed”. This was pretty much the case.

In a nutshell: The surgeon is happy with the current MRI as it shows everything is normal (which he expected anyway) and that there is flow through the stoma. They have noted scar tissue from my previous shunt surgery, which he says should not be causing me any discomfort like the burning, pulling pain I get down my old shunt tract. “Maybe under the skin but not at the site of where my old shunt was”. ICP Monitoring is the next step but due to the current situation with COVID-19, that will only happen if and when I’m symptomatic, as the “hospital aren’t really allowing bookings of this kind purely for diagnostic purposes” – understandably so.

If anyone had to say to me: “I don’t want to live anymore…life is too hard”, I’d be the first to try and encourage them to see things differently, to dissuade them from their way of thinking and possibly ending their life. But…

I’ve been pushed to the edge. An edge where I will request a script for some medical marijuana and manage the pain and effects on my own. Pain which has been troubling me more often than not, where I smile at the world around me and fight against my own body’s torture chamber. Waking up all hours of the night because of pain down my spine, back, arms and head. I’m refusing to play this damned game any longer and letting the symptoms run their course. (Is this the same as being suicidal…? To not seek help if and when you need it and to allow nature to take its course…?).

You see, as people diagnosed with Hydrocephalus, each time we go in search of medical help, it’s not because we are crazy, attention seeking, hooked on drugs, depressed, etc. (This list is endless).

It’s because we actually want someone to make the pain go away, to take away the fear that we won’t be there to take care of our families…our children. It’s because we know there’s something wrong because we know our bodies well. We know we are not faking, and we know that giving up is not an option despite feeling like we want to.

But, sometimes, we get to a point where we know we’ve given it our best, fought hard and just simply don’t have the will to carry on.

Everyone has their breaking point; everyone has the right to say, “No more!” Right now, I’m exercising that right. As for my family, I’ve certainly given it my all for them whether they realise it or not. I know they don’t read these posts and maybe that’s a good thing. I know the time will come when they will…Despite not wanting to at first, I told my husband about my consult today and gave him the option to sit in or not. He did and I’m glad he decided to. At least now I don’t have to feel like I’m making a mountain out of a molehill when I tell him ICP monitoring is the next step!

I was planning on facing it all alone, going to the hospital, etc. (when and if the time comes) but, I owe it to my kids not to do that.

I don’t want to be this angry person anymore because I simply don’t feel listened to. It’s bloody hard fighting against the system, not getting anywhere and even more so being a complex case. It’s not even about making yourself heard because I believe we all do that in our own way. I think a lot of it has to do with the other parties’ willingness to listen…and clearly, they’re not…

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Published by Skyewaters

I blog about Hydrocephalus to give a voice to the millions (if not billions) of people around the world with this condition NOT disease. As much as these experiences are unique to me and my family, I’m sure others have experienced it too. My aim…to shine a light on it and raise awareness – simple and challenging at the same time but worth it!

13 Comments

Linda Baggio

‘You see, as people diagnosed with Hydrocephalus, each time we go in search of medical help, it’s not because we are crazy, attention seeking, hooked on drugs, depressed, etc. (This list is endless).
It’s because we actually want someone to make the pain go away, to take away the fear that we won’t be there to take care of our families…our children. It’s because we know there’s something wrong because we know our bodies well. We know we are not faking, and we know that giving up is not an option despite feeling like we want to.’

I can honestly say that too, prior to my ETV being done in 2012. Though it’s coming up to being a few years post-surgery and God only knows that it’s not a magic bullet, that’s exactly how I felt in the professor’s office. I just wanted him (or someone) to take the damn pain away, and the fact that no-one even knew (or suggested) an ETV to me I thought, was pretty damn ignorant, much more negligent. Crying like a 3-year-old in front of him also didn’t help.

Enjoy reading your posts as always. Thanks my hydro-sister.

Skyewaters

Lynda Jones

Thanks for the honesty. I’m not depressed or anxious- the label they give me when I go yet again to ask if they can check on my shunt because of the symptoms. They do the test knowing full well with spina bifida the tests don’t show the true picture- only the symptoms do, which they ignore. Too many of us are being fobbed off. My impression is they haven’t got a clue what to do next. They just tell me I am old for spina bifida….go home.

Skyewaters

I hear you Lynda! Some days I can say we should fight and not give up and other days, it just seems too hard.
We have to own it and do what’s best for ourselves…as far as possible. Not easy, I know. Thanks for sharing 💙

Dennis

Hit enter by accident, sorry. But I get what you mean about depression, I never thought of myself as depressed, but who wouldn’t be with this going on right? I was sent to see a psychologist and she asked if I have suicidal thoughts. My reply was no, but if something were to happen that would threaten my life, I wouldn’t care. Your comments are so real and relevant for me. I am not married with a family or anything, but I have had a full life and worked hard to be where I am. So when the time comes, “I have to wonder would I do anything, would I seek any help?” I guess I won’t know until that time does come. Even the support websites just feel like the more you tell the less they want to hear so I just stop most of them too. So back in my private world I go and just be thankful to God that I ma not in pain. I hope that you get the help you need too, your family would love to see you happy and pain free! Thanks for listening/reading

Dennis

Skyewaters

I understand that 💯! Thank you for sharing Dennis.
I would also agree about some of the support groups. I think people in general don’t really want to hear the bad. They expect you to be happy go lucky all the time and that’s not always possible.
Feel free to reach out even if it’s just to vent, you don’t have to feel alone💙

Anonymous

Skye, I am so sorry to hear things are going that bad for you. But I feel like you are speaking for me. I have Chiari and Hydro and feel like once these were done in 76 and 80 everyone thought cool he is fixed.. if they only knew!! The one time in 92 that I did go back for more help I was told everything looked good. So I just fought, spent most of my time alone so no one would notice I was a mess. You talk of “smiling at the world around you and carry on with your torture”. I know that too well for 57 years. I finally brought the truth to the forefront with my PCP in Dec 19. He sent me to a Neurosurgeon out of town. Almost the first thing he said to me was “I want to help anyway he can, but I will be honest if I think it will add even one more thing for you to deal with. I can tell you can’t take even one more thing” I almost lost it, finally someone “see’s” Me. Another shunt was placed and my pain is better than it has been in years. But it threw my mobility into a tailspin. I will deal with that because my pain is minimal now.

(((Skye))) <3 I'm so sorry you're up against this! It's been a long time since I've had any issues with hydro, but I'm currently battling a new health issue, and getting a dx in the face of this pandemic is impossible when you need lab work and other things, so I hear you! It's very frustrating. Love and hugs to you, Sista! <3